Living with advanced colorectal cancer: How prepared are informal caregivers to care for their loved ones?

179 Background: The ‘Living with Colorectal Cancer’ prospective cohort study seeks to characterize the experiences of patients diagnosed with advanced colorectal cancer and their caregivers, in order to inform care improvements. Here we describe informal caregivers’ perceived preparedness for caregiving. Methods: Eligible patients were identified by oncologists in Alberta, Canada’s two tertiary cancer centers. Consenting patients were given the option to invite a caregiver to participate. Caregivers’ preparedness for caregiving was assessed at enrollment and every 3 months thereafter using the Preparedness for Caregiving survey. This survey assesses levels of preparedness using 5-point Likert scales for 8 caregiving domains (e.g. caring for the patient’s physical and emotional needs, finding and setting up services, stress of caregiving, responding to emergencies), and one open-ended question. Results: In one year of recruitment, 55 caregivers in Calgary and Edmonton were enrolled, of which 65% were female, and 80% lived with the patient. Caregiver preparedness decreased over time from months 1 to 7 of follow-up, across all categories. Caregivers were least prepared for the stress of caregiving and caring for the patient’s emotional needs. They were most prepared for taking care of the patient’s physical needs at enrollment. Open-ended comments on specific preparedness needs were numerous and extensive. A range of topics were reported, the top three being: caregiver health (physical, mental, self-care), emotional aspects (preparing children and family, feeling alone) and end of life (hospice, palliative care, transitioning). Conclusions: Our data suggest that in the advanced cancer setting, caregiver perceived preparedness declines, with increasing stress and emotional distress over time. This may be related to patient illness progression. The open-ended qualitative comments on the Preparedness for Caregiving survey were particularly useful in understanding specific caregiver concerns. Caregiver experience, including sense of preparedness, is often under evaluated and this study suggests more attention is needed. Clinical trial information: NCT03572101.